Cancer Sucks – Page 5

Exile Island – the Wish Kids Edition

Today was quite a day!

Our family took part in an event put on by the Children’s Wish Foundation.

It was a “Survivor” type event, called Exile Island, that took place at the Vancouver Art Gallery, and it was AMAZING!

Every “Wish” child was partnered with a “Sponsor” who’s goal was to raise money for the Children’s Wish Foundation. The day was filled with activities and challenges that the “Wish” Child & Family and “Sponsor” worked together on to complete and possible win!

Our kids were all excited about today, mostly because they got to skip school to be apart of today’s activities. I think that they would have been more excited about the day had they known exactly how fun this event was going to be. We showed up at 11:30am and registered as a “Wish Family”.

Registering

After registering, we headed over to the lunch table to snag a few DELICIOUS sandwiches that were made by Marmalady Catering! AMAZING!

The Opening Ceremony was hosted by Tamara Taggart who is absolutely lovely and after it was finished, the events began.

Each team was responsible to make a flag to represent themselves and seeing as we are headed out on a Caribbean Cruise to Disney’s Castaway Cay……the kids decided that we should be called “the Castaways”

Our Team Flag – The Castaway’s

The Wish Kids were all introduced and then called up to bang the official GONG! How fun is that?

Just after Geli rang the GONG!

Our Sponsor was the lovely, Andrea Shaw of the TwentyTen Group.

It was an absolute pleasure to be partnered with her. She was kind and loving and so SO sweet with our entire family. She made today so much fun for all of our family and we are so grateful for all she has done in raising money for the Children’s Wish Foundation. It’s hard to fully express the gratitude that I feel and so a simple heartfelt Thank You will have to suffice.

I’m realizing now that I don’t have a picture of our family and Andrea and I’m hoping that I can get a hold of one because I know that there was one taken by the event photographer……now to figure out how to get my hands on it?!?

This was such a great event and our WHOLE family had a great time…from the adults all the way down to the youngest member of our family.

Judah…..although I think he was probably more excited about the balloon rather than the day’s activities.

After one of the challenges, the team was supposed to decorate a t-shirt and here was our team’s contribution.

Here is photographic proof that I was actually AT this event. I spent a good part of the day holding Judah and corralling Siah but I stopped for a quick moment for a shot of Siah and myself.

One of the events was a Scavenger Hunt and as part of it, you needed to dig through this kiddie pool full of crumpled newspaper to find certain items….

During the Scavenger Hunt

Siah had been eyeing the pool up for most of the day. He was SO EXCITED when the event was over and the pool had been dragged off to the side and the had the opportunity to jump in for himself…..

And SERIOUSLY…..what event would be complete without a Dance Party…

Jeremy has some MOVES! He’s pretty cute, if I do say so myself!

The little boys were up and down the stairs of the Vancouver Art Gallery a million times and I got so sick of yelling at Siah to get down off the Lions….apparently they are a HUGE climbing attraction for little kids.

The Last challenge of the Day was a Food Challenge….where the teams were required to whip up some Whipped Cream…..BY HAND!

and the Andrea, our sponsor, had to find gummy worms in the bottom of the pie….without the use of her hands. YUCK!

She is such a trooper….

It was a LONG, FUN-FILLED, Action Packed, AMAZING Day. It was a day that we will not soon forget. Everyone is so completely worn out from the excitement of the day, but in a good way….

A HUGE THANK YOU to Children’s Wish for putting on the Exile Island Event and for helping to make Wishes come true. And another HUGE THANK YOU to ANDREA for all her hard work and support.

It was so touching to be apart of this event and to see all the special, inspiring Wish Children. To know first hand the impact that getting a wish makes, is huge! To see all these people working together to make these wishes a reality is something that I will never forget.

If you are interested, you can go to their website and donate now!

To see the Wish Kids, to hear their stories, to witness their challenges and to see that in spite of any hardships that they go through that their spirits are so very VERY strong….well, it’s all so very VERY touching and so very rewarding to be apart of making these wishes come true!

We are SO looking forward to going on Angelica’s Wish Trip at the end of this month. After the event today we were given a huge box full of stuff for our cruise…

But, I think that this post is long enough and so I’ll post about the Wish Trip Box in another post.

I apologize for the crappy iPhone photos, but with my hands full this afternoon, it was this or nothing and I preferred this to Nothing! If you are interested in seeing the whole set from today, then you can click here.

Day Two……and a half.

If the rash on Geli’s back and thigh showed up on Sunday night then we are on day 2 and a half of this stupid cycle.

After she was admitted on Monday they started her on an anti-viral mediciation that is used to treat Shingles. Typically if a child gets a virus there is not too much that they can do other than just let the virus run it’s course, but with this particular virus….the one responsible for Chicken Pox….they can give a course of the drug, Acyclovir. Right now she is on an IV medicine, but can switch to an oral med if her body heals up quickly.

Doing Homework after school on Monday

And that is what they’ve done. She in on a 7 day treatment plan and basically they are waiting for the rash to blister up and then start to crust over…..disgusting, eh? But, that is what happens and so that is what we are looking forward to.

The rash started out not too badly on Sunday night and Monday but by Tuesday morning it was worse. One good thing though….the actual “blisters” within the rash were really tiny. It’s pretty nasty looking, but I think that she is starting to get better now. She has not had too much pain. On Sunday night and Monday she said that there was pain where the rash was at about a level 2 out of 10 and that there were times where it would be “shooting pain” and that shooting pain was at about a 4 out of 10. The worst pain was when someone would touch the rash and in order to get a sample to “test” they had to do a scraping….yah and the first sample didn’t have enough to get a good test and so they had to do it a second time. Sucks, eh?

Short Nap in the Stroller

Yesterday she said that it maybe hurt a little bit more, but for the most part it was okay. This morning it doesn’t really hurt at all and when the resident came in to see Geli, she was pleased to see that some of the rash has already started to scab over which is earlier than they would have expected.

He just crashed on Monday night

Thank you so much for your prayers and encouragement and support. It means so much to us.

Here are a few things to pray about….

We’d love to see Geli (and Jon) be healthy enough to come home by the weekend.
We are still praying the little boys don’t get Chicken Pox.
We are hoping that Geli will be able to catch up on all the school work that she’s missing this week without feeling overwhelmed.

So Proud that he climbed up on the stool by himself

As much as this is frustrating, I’m trying to look at the positive side of things. While in the hospital, Geli has been able to have the Physio Therapists come in and look at her and work with her and they will continue to do so every day that she is in and once she leaves, they will be able to be in contact with a Physio Therapist out here and to be able to communicate with them exactly what Geli needs as most of her issues are as a result of the chemotherapy. Some of the drugs actually damage the nerves and it can take some time before the nerves heal. Some of the drugs cause muscle damage and that can also take a while before the toxicity flushes out of her and her muscles are able to recover and rebuild. And on top of that there is muscle atrophy, just from lack of use…..

It actually fits in the garage now! Thanks, Momma!

This is such a tough road to walk out but at least now we have a “sort of” “somewhat” plan moving forward. On top of that Geli was able to hear that all this physical crap is “normal” for someone who has gone through what she’s been through and that it will take her probably 6 months to recover from the damage that the chemo has wreaked on her system. It’s so good to hear that this is all a part of the journey.

I mean, it’s horrifying to go through this and yet there is a certain level of comfort in knowing that this is part of the process. It’s a horrible HORRIBLE process, but she will come through it.

4 Boxes and 2 bags of recycling after the big clean up

And so we carry on. The kids at home are doing okay. I’m doing okay. I’m tired. Even more tired than usual, but possibly less tired than earlier this year and so that’s a good thing.

Monday was a tough day for me and I’m so thankful that my Momma came over and spent the day with me and then she slept over and was around for the morning on Tuesday. She helped me to get my garage cleaned out from all the camping crap that we just “dumped” in our garage in our efforts to unpack the camper at warp speed at 10pm the night we came home.

Signs that your child is a climber.

And now I can actually park our van in there which is a HUGE HELP as we had been parking it out on the road outside our townhouse complex. Now I don’t have to schlepp the diaper bags and kids and other assorted crap out to the van when I want to leave….I can just huck all that stuff in from the comfort our our own garage. YAH!!!

I still want to share about our time away up at the lake and also about Jeremy’s official diagnosis. Lets just say that the last half of the summer was not uneventful.

Down time for me, before bed

Currently, the baby is sleeping and has been sleeping for just over an hour. I am shocked and amazed and and fully expecting him to wake up any minute as he NEVER sleeps this long. Mind you when you half wake up and won’t settle from 11:45pm until 12:20am and then are up again at 2am and at 4 am and at 6am and then up for the day at 7am……you’d think that you might be slightly tired, no???

Well, I’ve got to get going and the battery on my laptop is about dead, so with that….I’m off.

Oh, one more thing…Geli reads the blogs and comments when she’s in the hospital so if you have a quick hello or a cute joke or a funny story, I know that she’d appreciate it. She’s a little bored and she’s not allowed to leave her room unless she wears a mask and heads right outside. They’ve got her in isolation to protect any other kids with compromised immune systems……and isolation….is not as cool as you might think it could be.

Thanks again….YOU ARE AMAZING and WE APPRECIATE YOU!

Not as Planned

Today is not going exactly as planned.

Jon has just taken Angelica into BC Children’s Hospital (as of 9:30am, Monday morning.)

This has left me a bit shocked and I am really praying that Xandra and Jeremy handle the news better than I have. (I’ve already been crying and angry and upset and shocked and so confused and frustrated and really REALLY PISSED!)

Last night around 8pm Angelica came down to the kitchen to show me a rash that was in a stripe and started at the middle of her back and wrapped around hip and down onto her thigh. It was quite angry looking and some of the welts…..well, they weren’t weeping, but they looked close to it….

We called into the hospital and told them that we’d given her benadryl and put some hydrocortisone on the rash and they said that this didn’t sound like a complication of her chemo or the meds she was on and that we’d done the right thing and that was it.

So we sent her to bed.

Things have been a tough recently with Angelica because her body is so fragile and “broken down” from the past year of treatment. Her muscles have atrophied some and she has grown so on top of weaker smaller muscles they are also stretched and she hurts all the time. She walks like an old lady and…..and….well, she hates it all. She hates being in pain. She hates that shes not strong enough to just do “normal” things. And to top it all off….our insurance doesn’t cover her going to see a kinesiologist – which would be a way better treatment for her than Physiotherapy. It’s all so frustrating….

Yesterday we had a huge conversation with her (that involved a lot of tears) about her BELIEVING that she will get better. It has felt like she’s unsure about whether or not she’ll get better and be able to just be normal and strong when it’s been so long that she’s been hurting and feeling sick and weak and unable to just do the things that you and I take for granted.

She finally got to the place where she could say, with some conviction, that she believes that she will get better, get stronger, get healthier……

And then this rash shows up….

And then we have to call the school and have her paged to the office to be picked up…

And when she gets into the car, she has a bag packed for a possible extended hospital stay…

And this is all happening on the first “normal” day of her grade 9 school year….

And this is all happening after she stands and believes that she will get better…..

And this is all happening 2 weeks before we are supposed to leave for Angelica’s “Wish trip”….

And I’m a bit in shock about it all….

I want to believe that it’s going to be nothing and we’ll see them home in a few hours, but I’m scared to hope for the best and to be let down.

Jon and I had planned to spend a “down day” today on his day off. Cleaning up our grarage (which is still loaded with crap from our camping trip) and just spending some much needed time together….and instead we are gearing up for Anti-Viral’s or Antibiotics and Extended Hospital Stays or Who knows…..

Please pray.

Pray that Angelica will he healthy. That the two little boys will not get chicken pox from this. That Jon and Geli will be able to come home. That this won’t affect her Wish Trip. Just please pray!

I can do this…I have to do this. But I really don’t want to.

It sucks.

It sucks for her.
It sucks for me.
It sucks for all of us.

It just sucks!

Beginnings

This fall is really feeling like a new beginning for me this year…for our whole family.

We had the most amazing time away. I’m not gonna lie, a camping trip with our family of seven and then add in a friend…..and it’s not really a “vacation” for the mom but still it was so nice to get away. Away from grouchy neighbors, away from the telephone and internet and electronics of all kind, away from a fast paced lifestyle, away from the housecleaning and so much more…..

We got up and ate breakfast and sat by the fire, then we went swimming. Then we sat around or chased the baby and then went swimming again. Ate lunch, swam some more, read some books, went swimming again. Ate some more and then swam some more….Made and ate dinner, cleaned up from dinner went swimming again, got the kids ready for bed, sat by the fire, watched the stars, went to bed and then started all again the next day.

All in all, it was pretty amazing.

We came home and the “clean up” after camping….well, it was HORRENDOUS and it’s taken us over a week and a lot of nagging on my part and our house is finally livable but the garage….well, let’s just say that we cannot park in there just yet. I’m praying that by this time next week that we’ll be able to park our van in the garage.

In all the clean up, I even rearranged our house back to it’s original place. When Geli got sick last year and Judah was born, I rearranged our house so that I could easily watch the kids in the kitchen while I was nursing. Basically I flipped the living room and dining room. With Jon in the hospital so much, it was just easier for me to be able to see into the kitchen to see what all the monkey’s were doing and that’s not possible when the living room is in it’s normal place.

I was so surprised how changing things back to their original place really made a difference in my mind. It really felt like things were getting back to normal……well, it’s more like redefining life. And even in the middle of this “new beginning”, we are still walking through Angelica’s cancer treatment.

Angelica is still going through chemo.

She has a monthly appointment at the hospital to get a shot of Vincristine and Methotrexate into her spinal fluid.
On Monday’s she takes 13 pills of Methotrexate by mouth.
Once a month she has to take a steroid for five days.
She also has a daily dose of chemo.

She does this until October 2012!

So, although we are in a less intensive phase, she is still actively going through chemotherapy.

Angelica is working towards recovering from this past year. She has definitely lost some muscle and is not as strong as she was before. But she is trying so hard and we are so proud of how hard she is working to overcome all the challenges that she has come up against.

This is going to be a good year. I choose to believe that.

I’m looking forward to see what this year brings.

Happy Birthday Josiah

Today, Josiah turns 4. We are so proud of our little man and all that he adds to our family. Josiah, or Siah as most people call him, is very very very kind and loving and joyful. He is also younger than Jeremy by almost 7 years and wouldn’t stand a chance of being treated fairly, except he can very most definitely assert himself.

Josiah came into our world as a miracle. We had lost four consecutive pregnancies, and had basically decided that it wasn’t going to happen. The timing was all off, we shouldn’t have been able to get pregnant right then, but it happened. Patti’s brother, Chris, had his accident not long after and that consumed most of the pregnancy (and explains why his name is Josiah Christopher Culley). And then Josiah was born.

He has had a personality all his own since the day he arrived. He stole my heart right from the beginning. He has the ability to lighten the mood in the room, (or to do the complete opposite). He loves small fiddly things that he calls his “doo-dads” and says the most adorable things like “Gramma, you are my present”. He calls his favorite people with the word “my”… “My Brynn and my Chris are getting married and I’m their bear boy (ring bearer)”. Josiah is an amazing son, and Siah, I love you more. (He tells me that he loves me, and I say I love him more, and he says I love you the most, and then says “I win!” really fast, and it always makes me laugh).

We are fairly practical and don’t do much to celebrate a first or second birthday. Those parties are nice, but the kids don’t remember them and are mostly overwhelmed at why life got so weird for one day. But come age three, its party time…. Except in Siah’s case, we basically skipped his party last year, as Angelica’s treatment was overwhelming, and so this brings us to today.

Siah Looking at Daddy — My favorite photo of Siah - I am in his eyes

This summer is a bit of a cave for us… I mean that in the sense that it feels like a tornado went through our house last year and the violent winds, picked up and threw around our emotions, our energy, our direction, our fears, our life and left the house just a month ago. The cancer treatment has switched to something far more manageable, but just like a tornado coming and leaving, life isn’t just ready to get going right away. You have to repair the damage. I use the term cave, because the storm has moved on, but normal is unlivable and so we are temporarily living as simply as we can while we repair emotionally, spiritually, physically, and in every other way. We will live in “normal” again, but we need the summer to be able to.

With that said, as of Monday, there was no party planned. As of today, we are having a party. If it is the only thing that gets accomplished today, then it will be a great day.

Josiah is sooooo excited. Angelica has already given him a present, and he has fully clued in to what is coming. He is telling everyone that he is getting a “ball that turns into a bird” for his birthday, and it took some doing to figure out what that was, but he is indeed getting some of those.

~
Jon

New York – Day 1

Angelica had to get up SUPER EARLY on Sunday morning because she had to BE at the airport at 5:30am. This meant that she needed to leave our house around 4:30am….which means that she had to wake up even earlier.

Jon and Geli managed to get off for the airport on time and they met up with the rest of her group.

After a hug and a kiss, she was off…

They landed in New York on Sunday evening…..

Airports always have neat art or sculptures in them don’t they?

Angelica came home telling us about the amazing vending machines that she saw and it seemed quite fantastical until she showed us this photo of a vending machine full of ipods and cameras and games and accessories…..is that not just insane!

Of course you’ve got to take a photo of the New York Taxi’s…..

They got into their hotel and got settled and after a LONG day of traveling they settled down for the night because the next day would start a WHIRLWIND of activities that would tire any of us….

The view of the sunset from Geli’s Hotel Room.

We’ve decided to break each day up into it’s own adventure and story and so come and check back in to hear more about Geli’s adventure…..

To see all of the pictures from Sunday July 17th – click here!

As It Is……

I typed this earlier today and then didn’t have time to proof it….so it may be scrambly or not make sense in parts, but that is how things are going these days and if I try to take the time to work on this….then I may just give up and not post it….and so here it is….here I am…..there is where I’m at…just as it is….

These are some tough days that we are going through right now.

Angelica’s counts have been so low over the past week or so and it makes for some very stressful times. It feels very vulnerable and like she is unprotected. Because the “enemy” are unable to be seen with the naked eye…it makes this fight, that much more difficult. We don’t know where they are and so it makes protecting Angelica almost impossible.

Any open wound, no matter how large or tiny is an open source for infection and at this point, a tiny paper cut could send her into the hospital……

It’s not that the paper cut could send her into the hospital, but that the cut is an open wound and if she comes in contact with a bacteria and it gains entrance into her body…..she has no ability to fight off that infection.

The health that you or I take for granted……the cuts, and scrapes…the bacteria that we come into contact with and never think twice about,…..it all poses a very serious risk for her.

And right now especially, it’s tough….because she is supposed to be going to New York in 12 days. That’s less than a course of antibiotics (14 days) and throw in the 24-48 hours that it would take to culture the particular strain of bacteria or virus and you are looking at possible 16+ days in the hospital……none of this do we want on a good day…..much less when her trip is in 12 days.

Every time she mentions, not feeling well or that she has an upset tummy or a headache, or she feels hot or cold…..every time she coughs or feels like she might barf……we reach for the thermometer to take her temperature because when her counts are this low, a fever is often the only indicator that something might be brewing in her system.

I have been feeling so worn down as of late. I feel like I am reaching the absolute end of my rope. There are things that are just piling on top of everything else and making the end of this stage of the journey that much tougher.

I’m physically tired. I’ve mentioned this before but it’s true. I can keep putting one foot in front of the other because I HAVE TO, but that doesn’t mean that those feet don’t feel like they have been dipped into cement.

I’m emotionally tired. I’ve spent a good portion of this past week just on the edge of crying and every little “bump” has sent me over the edge and set off tears.

Probably the biggest frustration for me personally is the mental exhaustion……I am just not able to compute things right now. I am struggling with organizing and putting things together. This might sound so simple and ridiculous to you, but I walked around Superstore 3 times on Monday afternoon with my shopping list in my hand and yet……I just could not seem to make sense of my grocery shopping list. I had to double back to pick stuff up and in the end I had to get Jon to just walk me through the last bit of my list as I just couldn’t make sense of it……even then….we walked away from the store forgetting to pick things up.

I walk around my house forgetting what I was supposed to be doing and why…..

I’ve just gone too far and things that I used to be able to do on brain power alone, and then with lists and prompts and gadgets and reminders…….I find myself unable to do even with all the “help” and tricks that I’m trying.

And that inability to function at the top of my game it makes all of this that much tougher. I don’t’ even feel like I’m functioning “in the game” and that sets off those tears all over again.

I’m trying so very hard to be gentle on myself and yet, I expect so much because I am normally capable….but right now I’m not….and that’s hard for me to deal with.

We reach for the thermometer to take her temperature and inside I am freaking out….praying and hoping and wishing (and truthfully panicking) that the thermometer will read low numbers….that I wont see a number indicating a fever….

Just that stress alone is too much right now….

On Thursday her neutrophil count was not able to be counted (it was too low to be measured…lower than .02). Monday when we took her in for blood work, her counts came back at .1 and while this is much better than the previous count….it’s still WAY TOO LOW and she is still SO at risk.

She will get another set of bloodwork on Thursday and we are hoping that her numbers will be over .75 and she can start Maintenance…..

Did you know that exercise actually boosts your immune system? Like immediately there is a benefit……when oncology kids are getting their bloodwork done to be able to start chemo….they have to be at a certain level in order to start the next phase of chemo. If their levels are borderline low…they will actually have the kids walk around the hospital or walk up and down the stairs a few times and then run another set of bloodwork and it will be up and over the level needed…..amazing isn’t it? It’s huge incentive to exercise especially throughout the fall,winter and spring……just some thing to think about, eh?

We’ve been walking everyday. We are hoping to accomplish a few things with this. One, to boost Angelica’s immune system and to get that neutrophil level up. Two, to increase Angelica’s strength level. She’s spent a great deal of this past year on the couch and it’s time to rebuild up the strength and muscle that she lost. Three, we are getting a little bit of sun, which helps to get extra vitamin D into all of us. That “happy vitamin” is so necessary and good for all of us; plus it puts a little bit of color into Geli’s skin and again with the whole…”she’s spent most of the past year inside and on the couch” business…..between that and being chemo induced anemic…..she’s been looking pretty pasty. The color gives her a bit more of a healthy glow….which matches her new healthy position in life! Don’t worry, I’m a big fan of proper and safe sun exposure.

We are hoping, although we won’t know, that her counts will have come up above .5 (the level that she was allowed to safely go to school at) by tomorrow…..this would allow her to do a few more things like going shopping with us and running errands and things like that.

Once she starts Maintenance, then her counts will obviously be high enough and I will feel like I can breath and relax….

To be honest, I’m scared. I’m scared of feeling like I can relax. I’m scared of how I might feel were I to just relax…. I’ve been trying so hard to keep things all together and it feels a bit like a dam might explode and I don’t feel like I could handle that. I’m scared of the tidal wave of emotions that might be unleashed were I to just relax….

I just want to go and sit somewhere by the beach and let the wind blow ~~in my hair ummmmm, well~~ on my bald head, to feel the sand in my toes…..to just close my eyes, and smell the salt air and let the intensity of this past year just wash away from me with every wave that crashes.

I’m hoping that this summer will be a healing one….and that I’ll get a few chances to make it to the beach.

So What’s Up?????

Well, Jon and Angelica came home on Tuesday afternoon. Basically, they let her go home because she was just sitting in the hospital waiting for her counts to come up.

We really WANTED them to come home and it seemed like her counts were headed in the right direction and so we were kinda pushing for them to let us come home….and they did!

It’s SO NICE to have them both here and for us all to be together.

happy to be together

It was especially nice for them to be around for Xandra’s Birthday party on Wednesday afternoon because last year……well, last year Xani’s birthday was consumed with the Leukemia diagnosis and it was not the typical celebration of a birthday that we might do. We did celebrate, but it just wasn’t the same with the family split between the hospital and the home.

We fully expected Angelica’s counts to start rising and for them to come up quite quickly.

But, as of her blood test yesterday…..ya, that’s not exactly been the case.

Well, not entirely……

All of her counts HAVE come up except for those darn neutrophils…..those infection fighting white cells….ya, those are the ones that we need to come up. Everything else is coming up nicely. While her white blood count was a 1.9….her neutrophils were too low to even count…..this is NOT GOOD!

So, please, Please, PLEASE pray that ALL of her counts would come up and that she would not get any bacterial infection.

She’s also been coughing a bit and it’s just some stupid virus, but I wonder if it’s affecting her counts in some way. Like, if the neutrophils are being used up by the virus……

So, perfect health and amazing blood test results…….that’s what we’re looking for.

Other than that, we are just hanging low….staying at home…..not really doing anything fun or exciting until her body starts producing a bit more protection for herself.

So while Summer Vacation has started…..we really need her counts to come up before we can really start any “vacation-ing”!

We are on “fever alert” taking temps and doing lots of hand washing and cleaning……it’s a bit stressful, but we just continue on trusting that it will all work out in the end.

Tuesday Morning Update

Well, we are still here. Angelica’s counts have been coming up VERY slowly. The good folks at BC Children’s want to make sure that when they send Angelica home, she won’t end up getting sick and having to come right back… They want her immune system to be strong enough.

Its hard though, because Angelica is not sick. She is completely healthy. The concern is not about her current health, but her immune system strength. It feels so frustrating to be sitting in the BC Children’s Hotel and just hanging out, knowing that Patti could really use a lot of help at home, and not being able to go home and help.

Alexandra turns 13 in two days and has a big party scheduled for tomorrow. We should all be at home today and helping to plan the party, but instead we are waiting to hear from the doctors to find out if they are going to “risk” sending her home.

So please pray that we get to go home, that Patti doesn’t stress too much about the party, and that Alexandra’s day turns out fantastic tomorrow.

Jon

Friday Night Update From BCCH

Its Friday night here at BCCH and I thought I would update everyone on how things are going here.

Playing Settlers of Catan. We've each won one game.

Angelica’s cultures remained negative through the 48 hour mark. This is really good, because it means that we don’t have to stay here for another 14 days. Her temperature has remained normal for almost 48 hours, and so by tomorrow morning, that hurdle to leaving here will have passed.

On the negative side, Gelica’s WBC (white blood count) remains extremely low, and that needs to come way up before we can go home. Finally here CRP (C Reactive Protein), which indicates inflammation in the body is slightly elevated from yesterday, and that needs to trend down (This is an odd indicator, because any inflammation in the body will raise the CRP including bacterial infection, viral infection, sore gums, zits… A really high CRP is definitely a bad infection, but slightly elevated could be anything, so they just need to see that its heading down and not up.)

Taking a Walk — Walking helps to raise the White Blood Count

At this point, we are healthy and feeling fine, but can’t go home till the WBC comes up and the portion of that that indicates the immune system fighting cells needs to be above a certain level (right now the level is “sample not enough to even bother testing”).

This is the part that really bothers me. It seems that when we come in here, it doesn’t seem to carry on business-as-usual at home. Something has gone wrong at home each time we’ve been in here it seems. Now Patti is dealing with illness and kids that can’t come in and visit and everything while we are here, and I’m not able to help her, because if I find someone to come in here and be with Angelica, I can’t go home and pick up whatever Judah has and bring it back here and risk a setback with Angelica. (well I haven’t been able to… we have a plan for tomorrow that includes me decontaminating in a hospital shower before I come back to Gelica’s room)

We are tired. We function better when we are together. Please pray for a really good WBC and a lower CRP.

Thanks, Jon

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